About 3 months later, the underlying cause of death was revealed: diffuse Lewy body dementia, “one of the worst cases they’d ever seen,” she said. “Because Robin’s disease pathway was extreme and unfolded the way it did, it highlights quite strikingly this disease spectrum. He had a perfusion of Lewy bodies, the essential underlying shared biology between Parkinson’s and Lewy body disease, scattered throughout his entire brain and brain stem.” She added that her husband’s prior history of depression from earlier in life “added to the challenge of getting a proper diagnosis. That single symptom of depression was being treated as its own illness, rather than part of the larger neurocognitive disease. It seems that one of the biggest challenges to getting an accurate diagnosis is that LBD symptoms have tremendous crossover with normal human psychology and behavior, mood, cognition and sleep issues. All of us experience fear, stress, anxiety, paranoia, trouble sleeping, mild depression, and other issues from time to time. We would hardly be human if we didn’t. The challenge of LBD is seeing the giant constellation that it is, rather than just a few of its stars.”
In early 2016, Ms. Williams received the “Commitment to Cures Award” from American Brain Foundation, honoring work she’s done raising awareness for Lewy body disease since her husband’s death. “The day I accepted that award and told our story to a room full of neurologists, my path was forever changed,” she said. “The ABF’s mission of connecting donors to researchers and curing brain disease was an alignment with my mission and hope.” She currently serves as vice chair of the ABF’s board of directors.
“From my own research and from the myriad of letters and information that has come to me, I have distilled what I think are the top three overlooked ideas in this disease space,” Ms. Williams said. “1. Diagnosis: The norm seems to be misdiagnosis, switched diagnosis, or no diagnosis at all. 2. Symptoms: They are being treated independently, apart from the neurological disorder. 3. Suicides: If more autopsies were done, more suicides would be attributed to this disease.”
She concluded her address by reflecting on the impact of her husband’s death has had in bringing an international spotlight to LBD. “When I meet individuals who have lost someone they loved to LBD, I see the pain in their eyes, but I hear the determination in their voice as they chart their own course toward making a difference,” Ms. Williams said. “I have been blessed to learn over and over again that I am not alone. I believe that Robin’s death in this battle against these diseases holds a profound purpose. There was tremendous power in what he suffered, and I saw that power up close. I’m here doing all that I can to see that power transformed into something good.”